Considerations for the provision of psychosocial services for families following paediatric burn injury—A quantitative study

burns 34 (2008) 56–62

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Considerations for the provision of psychosocial services for families following paediatric burn injury—A quantitative study Claire Phillips *, Nichola Rumsey Centre for Appearance Research, University of the West of England, Frenchay Campus, Coldharbour Lane, Bristol BS16 1QY, England, United Kingdom

article info

abstract

Article history:

The purpose of the study was to quantify and report levels of psychosocial distress in a

Accepted 7 December 2006

sample of parents of burned children to inform evidence-based recommendations for psychosocial support programmes. This paper reports on the cross-sectional quantitative

Keywords:

strand of a mixed-methodology study. Standardised instruments measuring anxiety,

Parent/carer

depression, family functioning, personality, child behaviour and social experience were

Psychosocial support

administered to 72 parents at different points after burn. Additionally, extracts from the

Recommendations

Burn Specific Health Scale were adapted for use with parents and responses analysed

Quantitative

descriptively. Between 69 and 33% of parents reported clinically significant anxiety and between 44 and 22% of parents reported clinically significant depression, at the inpatient and outpatient stage, respectively. Potential vulnerability markers for parental distress included lower emotional stability, younger age of mother and poorer family functioning. The wide range and high proportion of parents reporting clinically significant distress support the recommendation that screening should be a routine part of care. The relative importance of social factors over objective measurements of injury, such as TBSA, in explaining the observed levels of distress, supports the recommendation that routine assessment and a family-centred approach to the delivery of psychosocial support should be adopted and be offered to all parents, irrespective of the size of their child’s burn. # 2007 Elsevier Ltd and ISBI. All rights reserved.

1.

Introduction

Approximately 175,000 people per year attend UK Accident and Emergency departments with burns; 16,100 require admission and approximately 6400 of these are paediatric admissions [1]. Recent advances in relation to the physical treatment of burns have been impressive, with more severe injuries no longer resulting in the mortality rates previously witnessed. However, as reported by the National Burn Care Review Committee (NBCR) [1], equivalent investment in * Corresponding author. E-mail address: [email protected] (C. Phillips). 0305-4179/$34.00 # 2007 Elsevier Ltd and ISBI. All rights reserved. doi:10.1016/j.burns.2006.12.003

psychological support services and psychosocial rehabilitation within the UK burn care system has not been forthcoming. A review of the extant literature examining the psychological and social impact of burns on children includes consequences such as externalising behaviours (e.g. aggression), internalising behaviours (e.g. withdrawn or sleep disturbances) and a negative social impact of burns on the child [2–4]. However, research conducted in the USA, where rehabilitation programmes more often include a psychosocial

burns 34 (2008) 56–62

component, suggests that even following severe burns, a child may make a successful emotional and psychological adjustment [5]. A further theme within the literature indicates the importance of parental adjustment, family functioning and the family environment in securing the positive psychosocial adjustment of the burned child [6–8]. However, the impact of a burn or scald to a child can have profound psychological and emotional consequences on parents. There may be a loss of the image of ‘‘being a good parent’’ [9], feelings of guilt, depression and anxiety [10]. Aspects of Post Traumatic Stress Disorder (PTSD) in parents have also been reported as a consequence of paediatric burns [11]. In terms of vulnerability markers for adverse psychological effects in parents, the strongest appears to be pre-morbid mental health [12]. Other research within an adult burns population examines the role that personality characteristics may play in the development of psychosocial distress, with emotional instability and lower extraversion being key markers for a poorer outcome after burn [13]. Parental personality may also, therefore, be a mediator of psychosocial adjustment following paediatric burn. Considering the importance of parental adjustment to the psychosocial rehabilitation of burned children, relatively little research has been published and, with the exception of Kent et al. [10], this research had been conducted outside of the UK. However, since 2001 and the publication of the NBCR Report [1], the long overdue service development in the area of psychosocial support following burn has come more clearly into focus. In order that psychosocial support provision within the UK burn care system is evidence-based and needs-led, developments should be shaped by UK research examining the nature of psychosocial distress and patient-need following burn. To this end, the study provides evidence regarding the impact of paediatric burns on carers, with the objective of making evidence-based recommendations for psychosocial support programmes for use with affected families.

2.

Method

2.1.

Sample and procedure

The sample comprised parents of children with burns at the inpatient and outpatient stage at the three participating burn units (Morriston Hospital, Swansea, Selly Oak Hospital, Birmingham, and Frenchay Hospital, Bristol). Both inpatients and outpatients were included in the study in order to reflect the potentially different issues experienced by parents at these stages. The first phase of the study (2001–2002) established a rota to take account of potential seasonality of burns [14] such that each unit was visited for a recruitment week within different quarters of the year. All eligible cases presenting at either the inpatient or outpatient stage during the recruitment period were approached regarding the study. The second phase of the study (2003–2004) focused on collecting information at a single site from parents of inpatients who met the study criteria. The criteria for inclusion in the study was that the burn or scald had some element of scar permanence, the parent had

57

no previous mental health issues and the injury was not classed as non-accidental. Injuries that were recorded as superficial but with uncertainty regarding the potential for scarring were monitored at the outpatient clinic until the wound had healed and parents of those who developed scarring were invited to participate. The study received full ethical approval from the three Healthcare Trusts involved. Parents with children requiring admission for initial treatment of the burn were approached 48-h after admission to the burns unit and given an information sheet and consent form. Parents whose children were being treated in Intensive Care were not approached until 48-h after their child was sent to the burns ward. Consecutive parents attending outpatient clinics, and meeting the study criteria, were approached and given an information sheet and consent form with a freepost return envelope. On receiving completed consent forms, the outpatient parents were then contacted and an arrangement made for a home-visit. The total sample comprised 16 parents of inpatients and 56 parents of children attending outpatient clinics. The overall response rate for the study was 45%. A brief analysis was conducted on the basic data of non-responders (consent obtained at presentation of information sheets). There was no significant difference in terms of the child’s age (t = 1.89, p = 0.07) or proportion of males (x2 = 0.33, p = 0.56). Parents who participated did, however, have children with larger burns than those in the non-responder group (t = 2.33, p < 0.05). The children at the inpatient stage had a mean age of 2.6 years (S.D. = 3.4; range = 14), the majority were male (63%), mean TBSA was 12.9% (S.D. = 6.7; ranging between 4 and 25%), 50% of the children received skin grafts and the mean mother’s age was 30 years (S.D. = 5.2; range = 20). The characteristics of the outpatient sample, grouped by time since injury, are summarised in Table 1.

2.2.

Materials

The Hospital Anxiety and Depression Scale (HADS), a measure of general anxiety and depression, was used to measure parental distress (reliability coefficients range from 0.41 to 0.76 for the anxiety sub-scale items and from 0.30 to 0.60 for the depression sub-scale items). A score of greater than 7 indicates clinically significant distress or ‘‘caseness’’ [15]; parental personality characteristics were measured using the Mini Marker Personality Inventory, a personality assessment device providing 5 sub-scale scores for emotional stability, extraversion, openness/imagination, agreeableness and conscientiousness (reliability coefficients for sub-scales ranged from 0.74 to 0.83) [16]; family functioning was measured using the global scale from the McMaster Family Assessment Device (FAD), a measure of communication, problem solving and acceptance in families (reliability coefficient, 0.86), providing a global functioning score from 1 to 4, where higher scores represent greater dysfunction [17]; parental perceptions of emotional and behavioural symptoms (hyperactivity, emotional symptoms, conduct problems, peer problems and pro-social behaviour) in their child were examined using the Goodman’s Strengths and Difficulties Questionnaire (SDQ), which bands scores in terms of clinical significance (reliability coefficient, 0.85) [18];

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Table 1 – Characteristics of children at the outpatient stage Time band 1 (within 6 months TSI)

Time band 2 (6–24 months TSI)

Time band 3 (>2years TSI)

N = 56 Girls Boys

N = 35 40% (14) 60% (21)

N=9 56% (5) 44% (4)

N = 12 33% (4) 67% (8)

Mean child age (years) Mean mother’s age (years)

4.31 33.46

4.67 33.67

9.08 39.50

Mean TBSA Grafts

9.34% (1–55%) 51% (18)

16.44% (1–80%) 89% (8)

21.0% (3–76%) 92% (11)

Time since injury (months)

2.7

12.9

78.3

3.2. Levels of parental distress and broader psychosocial impact (inpatient)

parental perceptions of the child’s social experiences, including social life and interactions with others, were examined using the Toronto Childhood Experience Questionnaire (CEQ) (psychometric information unavailable at time of printing) [19]. Appropriate extracts were also taken from the Burn Specific Health Scale (BSHS) [20] and re-worded for use with parents. The BSHS forms used in this way cannot be scored to return a percentage functioning score as the instrument is not validated for use within this population, thus parental responses and ratings to individual items were analysed using basic descriptive statistics. For this measure, a lower rating for an item represents a poorer outcome. In addition to the above measures, additional information was collected regarding socio-demographic factors (e.g. age, family members living at home) and injury factors (e.g. TBSA, location of burn, cause of burn, grafts). Participants were also asked to make a self-report rating on a 10-point scale to indicate perceived severity and perceived visibility of the burn. Semi-structured interviews, including questions about the hospital experience, difficulties and consequences of the burn, and opinions regarding support needs, were also conducted with parents at the home visit (reported elsewhere).

3.

Results

3.1.

Aetiology

Average levels of parental anxiety and depression were significantly greater than that experienced by the general population (z = +4.5, p < 0.01 and z = +4.7, p < 0.01, respectively). On a more individual level, 69% (11) of parents reported anxiety in excess of the normal range (‘‘caseness’’), with 38% (6) of cases classed as moderate anxiety and 25% (4) of cases classed as severe anxiety. In terms of depression, 44% (7) of parents reported levels in excess of the normal range (‘‘caseness’’), with 75% (12) of cases classed as mild depression and 25% (4) of cases classed as moderate depression. Table 2 summarises the results for the parents at the inpatient stage. Considering family dynamics as an indicator of broader psychosocial functioning, no significant difference was found between the average family functioning scores of the study sample and the non-clinical reference sample. Furthermore, no families reported levels of dysfunction that would be banded as ‘‘unhealthy’’ by the measure.

3.3. Possible indicators of vulnerability to parental distress (inpatient) The small sample size precludes the reporting of an exploratory regression analysis to identify explanatory variables for the levels of parental distress at the inpatient stage. However, non-parametric correlational analysis was also performed using all numerical variables (age, mother’s age, time since injury, people in family home, family functioning score, anxiety score, depression score, TBSA, perceived severity, perceived visibility and personality sub-scales). Anxiety was found to correlate strongly with depression scores (rho = +0.7, p < 0.01) and, additionally, depression scores correlated strongly with (lower) parental extraversion (rho = 0.7, p < 0.01). Measures of burn severity, both objective (e.g. TBSA) and subjective (e.g. perceived severity rating) had no significant correlations with the level of parental anxiety or depression at the inpatient stage.

For parents at the inpatient stage (N = 16), the most common cause of their child’s injury was scalds from a hot drink/liquid (88%). Scalds from a hot bath (6%) and from contact with hot cooking oil (6%) were the cause of injury for the remainder. For parents at the outpatient stage (N = 56), the most common cause of their child’s injury, overall, was scalds from a hot drink/liquid (72%). Scalds from a hot bath (11%), flame burns (9%), flash burns (3.5%), chemical burns (1.5%), contact burns (1.5%) and contact with hot oil (1.5%) describe the aetiology for the remainder.

Table 2 – Summary of results for the parent group (inpatient) N = 16 Anxiety Depression

Mean

S.D.

Minimum

Maximum

Normative mean

Sig. ( p)

10.38 7.25

5.25 3.55

0 0

19 12

6.14 3.68

<0.01 <0.01

‘‘Caseness’’ (%) 69 44

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Table 3 – Summary of results for the parent group (outpatient) Mean

S.D.

Minimum

Anxiety (N = 56) <6 months (N = 35) 6–24 months (N = 9) >2 years (N = 12)

5.49 5.56 5.50

4.2 2.9 3.8

0 1 1

14 10 12

0.15 0.32 0.28

31 33 33

Depression (N = 56) <6 months (N = 35) 6–24 months (N = 9) >2 years (N = 12)

2.46 3.89 3.08

3.28 3.22 2.19

0 0 0

13 10 7

<0.01 0.42 0.25

11 22 0

Family functioning (N = 56) <6 months (N = 35) 6–24 months (N = 9) >2 years (N = 12)

1.58 1.58 1.56

0.46 0.51 0.42

1 1 1

<0.01 <0.05 <0.01

11 11 0

3.4. Levels of parental distress and broader psychosocial impact (outpatient) In order to explore the possible effects of time since injury, the data for the parents at the outpatient stage (N = 56) were grouped into time since injury bands of <6 months, 6–24 months and >2 years, broadly representing stages of the scar maturation process, associated levels of treatment and the changing burden of care for parents at these different stages. Table 3 summarises the results for the outpatient group. Although average levels of parental anxiety and depression did not exceed that observed in the general population, in terms of clinically significant anxiety (‘‘caseness’’), approximately one-third of parents in all time band groups reported levels of anxiety of between mild and moderate levels. In terms of depression, 11% (4) of parents reported clinically significant levels in the <6 months time band group and 22% (2) of parents reported clinically significant levels in the 6–24 months time band group. Burn specific health scale extracts (N = 42; age appropriate sub-group): 55% (23) of parents overall reported that they worried more about their child’s health since the burn; 50% (21) overall reported that they would like to forget their child’s appearance had changed, in particular for the <6 months and 6–24 months groups; 38% (16) overall reported that their child still had thoughts or images about the accident, in particular for the <6 months and 6–24 months groups; 29% (2) of the 6–24 months group felt their own family was uncomfortable around the child; 43% (18) overall reported that they felt their child’s burn was unattractive to others, in particular for the 6– 24 months and >2 years groups; 36% (4) of the >2 years group reported that they felt their child was bothered by other people’s reactions to them since the burn. Toronto childhood experience extracts (N = 22; age appropriate sub-group): 27% (6) of parents overall reported that their child was teased and 23% (5) of parents felt that people stared at their child. The parental rating for the CEQ item ‘‘My child is teased’’ correlated significantly with the age of the child (rho = +0.6, p < 0.01) as did the BSHS item ‘‘Child is bothered by other people’s reaction to them’’ (rho = 0.5, p < 0.01). Goodman’s strengths and difficulties questionnaire (N = 28; age appropriate sub-group): particular difficulties were revealed within the domains of hyperactivity, conduct problems and peer problems, with 29% (8), 29% (8) and 25%

Maximum

2.67 2.50 2.17

Sig. ( p)

‘‘Caseness’’ (%)

(7) reporting at least borderline clinically significant difficulty, respectively. Additionally, 14% (4) of parents reported emotional symptoms in their child. Considering family dynamics as an indicator of broader psychosocial functioning, 11% (4) of the <6 months group and 11% (1) of the 6–24 months group reported family functioning classed as ‘‘unhealthy’’ by the Family Assessment Device.

3.5. Possible indicators of vulnerability to parental distress (outpatient) The outpatient group sample size enabled multiple regression analysis to be performed in order to identify explanatory variables for the observed levels of parental anxiety and depression. The regression was performed on a sub-group for whom there were also BSHS ratings (N = 42). Additionally, ‘‘time band group’’ was inserted as a dummy variable as an alternative variable to absolute time since injury (months). Variables were grouped as follows: Socio-demographic variables: child’s age, mother’s age, people in family home, family functioning, sex of child (1,0); Parental personality variables: emotional stability, extraversion, openness/imagination, agreeableness and conscientiousness; Injury variables: TBSA, time since injury (months), perceived severity, perceived visibility, grafts (1,0), HDU (1,0) and objective visibility (defined as face/neck/head/hands) (1,0); Adjustment indicators: anxiety score and depression score (dependent variables); Burn Specific Health Scale items: individual items rated 1–5 by parents divided into social aspects (relationship with child affected by appearance, would like to forget child’s appearance has changed, family uncomfortable around child, people act as if there is something wrong with child, child has nightmares since, worry about child’s health now, child bothered by other’s reactions, child has thoughts about accident) and physical aspects (child has difficulty with usual activities, child’s burns break down, child has itching, child has pain, burns limit child’s activities, child lost strength and child lost energy). An exploratory regression approach was used, entering separate variable groups into independent stepwise regression analyses. This procedure ensured that the number of variables was appropriate for the limited sample size (i.e. a sample size of at least five times the number of variables) [21]. Due to the limited sample size, adjusted r-squared was used

60

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for all models to give a conservative estimate of the variance, taking into account the sample size and the number of variables [22]. All reported models had normally distributed standardised residuals (Kolmogorov–Smirnov analysis). Potential multi-collinearity between variables was excluded using a correlation matrix prior to regression analyses. The regression analyses indicated the observed levels in parental anxiety could be explained by three models: a sociodemographic model (F = 7.05, p < 0.01) where 23% of the variance in parental anxiety scores was explained by younger age of the mother (standardised beta = 0.4, p < 0.01) and poorer family functioning (standardised beta = +0.4, p < 0.01), a personality model (F = 5.82, p < 0.05) where 11% of the variance in the parental anxiety scores was explained by lower parental emotional stability (standardised beta = 0.4, p < 0.05), and an intuitive model (F = 8.92, p < 0.01), based on the social aspects grouping from the BSHS item list, where 16% of the variance in parental anxiety scores was explained by the item ‘‘I worry about my child’s health now’’ (standardised beta = 0.4, p < 0.01). Repeating the above procedure using parental depression as the dependent variable indicated that the observed levels of parental depression could be explained by four models: a socio-demographic model (F = 12.55, p < 0.01) where 36% of the variance in parental depression scores was explained by younger age of the mother (standardised beta = 0.3, p < 0.05) and poorer family functioning (standardised beta = +0.6, p < 0.01), a personality model (F = 7.98, p < 0.01) where 15% of the variance in the parental depression scores was explained by lower parental emotional stability (standardised beta = 0.4, p < 0.01), a child-feedback model (F = 21.68, p < 0.01) where 34% of the variance in parental depression scores was explained by ‘‘Child has pain’’ (standardised beta = 0.6, p < 0.01), and a model based on the social aspects grouping from the BSHS item list (F = 11.84, p < 0.01) where 35% of the variance in parental depression was explained by ‘‘Child has nightmares’’ (standardised beta = 0.4, p < 0.05) and ‘‘Family uncomfortable around child’’ (standardised beta = 0.3, p < 0.05). In order to produce a reduced variable set, and therefore a more conservative model, the final stage of the analysis combined significant variables from the group analyses and inserted them into separate stepwise regressions for anxiety and depression. The resulting model for parental anxiety (F = 7.84, p < 0.01) indicated that 25% of the variance could be explained by ‘‘I worry about my child’s health now’’ (standardised beta = 0.4, p < 0.01) and younger age of the mother (standardised beta = 0.3, p < 0.05). The resulting model for depression (F = 16.01, p < 0.01) indicated that 52% of the variance could be explained by ‘‘Child has pain’’ (standardised beta = 0.4, p < 0.01), poorer family functioning (standardised beta = +0.5, p < 0.01) and younger age of the mother (standardised beta = 0.2, p < 0.05).

4.

Discussion

The potential impact of parental adjustment on psychosocial outcome for the burned child has been outlined in the introduction. During the inpatient phase, high levels of

clinically significant anxiety and depression were observed within this sample of parents with no previously identified mental health issues. Parental anxiety and depression were strongly associated with each other, suggesting a global impact on parental well-being at the inpatient stage. This result taken in addition with the wide range in the scores observed suggests that in order to identify and appropriately support vulnerable parents, there is a need for early input from the psychosocial ‘‘team’’ through routine psychological screening of parents and also the need for early psychological support or intervention at the inpatient stage. Additionally, it should be expected that in a burns unit, there would be an additional workload of parents with pre-existing psychological vulnerabilities to identify and assist. In terms of potential vulnerability markers for parental distress, individual parental factors such as younger age of the mother and lower extraversion, and social factors such as family functioning appear more significant than injury variables—personality being a marker at both the inpatient and outpatient stage, age and social factors becoming additional markers at the outpatient stage. Interestingly, TBSA, perceived severity and perceived visibility had no significant associations with the observed levels of parental distress, nor were they significant explanatory variables in the regression analyses for parental anxiety and depression at the outpatient stage. This suggests that at both the inpatient and outpatient stage, all parents are at risk of adverse psychological effects, irrespective of the size of their child’s burn. The outpatient group gives an understanding of psychological need of parents later on in the burn recovery process. The results indicate a change in the relative nature of psychosocial distress at different time points after burn. Early on in the outpatient phase (<6 months) parents report higher levels of general anxiety and a moderate proportion of depression; parents at the mid-term stage (6–24 months) report general anxiety and the highest proportion of depression, the latter perhaps reflecting the ongoing scar maturation process and the realisation of the permanence of scarring. For the >2 years sample, it seems that parents again report general anxiety as the dominant adjustment issue, although due to small sample size the result perhaps requires confirmation through subsequent research. Whilst average parental anxiety and depression for the outpatient group did not exceed that found in the general population, it should be noted that the proportion of parents experiencing clinically significant distress, of more relevance in terms of caseload in the clinical setting, is considerable. These results support the case for a continuation of the early routine psychological screening beyond the period of hospitalisation and into the outpatient phase for parents of burninjured children, with particular attention at around 2 years after burn. The incidence of poor family functioning and its relation to parental depression indicates that psychosocial support programmes should necessarily include efforts to foster healthy family dynamics within this population. Literature suggests that such support is likely to facilitate adjustment in the burned child, as children fare better in ‘‘healthier’’ families, and may also bring benefits such as increased compliance with treatment [23]. Research with

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other paediatric patient populations, such as the chronically ill, reports other potential benefits to the health care system from supporting families in their care-giving role, including financial savings [24]. The descriptive results from the Burn Specific Health Scale, Childhood Experience Questionnaire, and the Strengths and Difficulties Questionnaire highlight other psychosocial issues that support programmes should address, including parental and family acceptance of their child’s altered appearance, interventions with the child to ameliorate post-traumatic distress, residual behavioural and emotional issues, and social encounters advice for parents and older children. The finding that injury variables did not significantly explain the observed levels of parental distress has a further implication in terms of requisite staff skills within the revised structure of the UK burn care system. Given that within this structure, smaller burns may be treated at a Burn Facility, issues are raised regarding the essential psychosocial support skills and competencies required at this level. The results indicate there should be fully trained staff with the ability to screen, assess, recognise and refer individuals or families who may require differing levels of psychological intervention and support (e.g. individual sessions, family sessions, support /advisory groups or advice regarding strategies for coping with visible differences and social encounters). Limitations of this study include the cross-sectional design, however, the results are broadly consistent with those reported within the literature. Small sample sizes for particular time band groups reflect the relative prevalence of different times since injury within the caseload at burn clinics.

5.

Conclusion

Clinically significant parental anxiety and depression at the inpatient and outpatient stage indicate the need for psychosocial support of families following paediatric burns. Individual parental factors and social factors appear to explain a greater proportion of the variance in parental adjustment than injury variables. The results endorse the following recommendations for the provision of psychosocial support following paediatric burn: (i) routine screening for parents at the inpatient stage, continuing into the longer term outpatient phase, (ii) psychological interventions to support parental adjustment at the inpatient and outpatient stages, (iii) psychological screening and intervention for all parents, irrespective of the size of their child’s burn, (iv) a re-assessment of psychosocial needs at 2 years after burn in response to increased vulnerability to parental distress and (v) appropriately trained staff to make psychological assessments and appropriate referrals at the Burn Facility level.

6.

Conflict of interest statement

The authors, C. Phillips and N. Rumsey, have no conflicts of interest to declare.

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Acknowledgements The authors would like to acknowledge the kind co-operation and support of all participants and staff at the units involved in this study: Frenchay Hospital, Morriston Hospital and Selly Oak Hospital. The authors would also like to thank the Healing Foundation for their funding contribution and the National Burn Care Group for their support of this work. Contributers: C. Phillips and N. Rumsey have both contributed to and read the submitted manuscript and have consented to being named authors. The manuscript has been solely submitted to Burns.

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